Constructing Ethical Guidelines for Biohistory

Andrews, Lori B.; Buenger, Nancy; Bridge, Jennifer; Rosenow, Laurie; Stoney, David A.; Gaensslen, R. E.; Karamanski, Theodore J.; Lewis, Russell E.; Paradise, Jordan; Inlander, Amy; Gonen, D.

doi:10.1126/science.1094372

Cited by 17 publications

(11 citation statements)

References 4 publications

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“…(13) Similarly, plans to genetically modify and patent 3 lines of taro, the traditional staple of the Hawaiian diet that is culturally identified as an ancestor of the NH people, met with significant resistance from the NH community (24). These issues echoed similar concerns raised by AI/AN (16) and Canadian First Nations (17) communities, and by projects such as the Human Genome Diversity Project and the Genographic project, in which researchers have sought to collect genetic samples from indigenous communities for reasons unrelated to community benefit (25). …”

Section: Discussionmentioning

confidence: 97%

“…The historical role of US institutions as colonizers, definers of identity and appropriators of culture has led to mistrust (9–11), as have traditional academic research practices, in which investigators, rather than communities, define the research agenda, methods, and interpretation and dissemination of study results (10–14). Thus, concerns over a project to map the NH genome (13) and a study of a novel genetic disorder in a NH family (15) reverberated in the NH community in a manner that echoes similar concerns raised by AI/AN (16) and Canadian First Nations (17) communities.…”

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confidence: 99%

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Navigating the cultural geography of indigenous peoples’ attitude toward genetic research: the Ohana (family) heart project

Vawer

Kaina

Leonard

et al. 2013

International Journal of Circumpolar Health

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BackgroundLittle is known about the burden of heart failure among indigenous populations, including Native Hawaiians (NH). Recent concerns about genetic research in the NH community resonate with similar concerns raised by American Indian, Alaskan Native and Canadian First Nations communities and have raised questions about the best way to proceed with studies involving biological specimens.ObjectiveTo help us plan a study to investigate disparities in heart failure incidence and outcomes in a NH community, we performed a qualitative study to examine the community's expectations for heart failure research that includes the collection of biological specimens.MethodsEighty-five NH with a personal or family history of heart failure, who lived in a geographically isolated community in the state of Hawai‘i participated in 1 of 16 semi-structured interviews. Interviews were conducted in a standard manner, with open-ended questions designed to explore their expectations for a heart failure research study that included the collection of biological specimens. Interviews were analyzed thematically through iterative readings and coding. ResultsFour key themes regarding heart failure research with the use of biological specimens characterized their expectations: (a) Need to foster trust between investigator and community; (b) Establish a partnership with the community to identify needs and goals; (c) Need for mutual benefit to investigator and community; (d) Identification of a key voice to represent the community. Participants expressed strong support for research. However, the strength of that support was directly related to the strength of the relationship between the research team and the community. The collection of biological specimens for genetic analyses was not an explicit concern or barrier per se.ConclusionsIt appears feasible to conduct a heart failure research study that includes the collection of biological samples. However, success will likely require addressing the community's expectations, including the need for a long-term partnership built on trust and mutual benefit, and a key voice to represent the community.

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Section: Discussionmentioning

confidence: 97%

mentioning

confidence: 99%

Navigating the cultural geography of indigenous peoples’ attitude toward genetic research: the Ohana (family) heart project

Vawer

Kaina

Leonard

et al. 2013

International Journal of Circumpolar Health

View full text Add to dashboard Cite

show abstract

“…Constructing Ethical Guidelines for Biohistory” [1], neither advocates nor argues against biohistorical research; instead, it points out that such investigations are currently taking place without guidelines—ethical, scientific, moral, or religious. The question remains: if such guidelines were to be established, what individuals, institutions, governments, medical examiners, family members, or intrepid biographers are to be given permission?…”

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confidence: 99%

Author's Reply

Hayden¹

2005

PLoS Med

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“…6 While we disagree with Sotos that historical descriptions should rule out genetic testing of Lincoln's DNA, the decision to embark on testing should involve thoughtful consideration of multiple factors. 7 For example, its impact on living individuals, historical importance, artifact provenance, ability to accurately answer the question, and artifact destruction should be considered. We believe the results would be historically significant.…”

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confidence: 99%